Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

akrasia

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@Amaya2014 , I think there should be such a liaison at the NIH.

And I will go you one further: I believe there should be at least one ME/CFS patient advocate appointed to participate in a monitoring role. This advocate - and there can be more than one - should have a say in approving each and every patient candidate for study enrollment. They should be part of the entire study process as it unfurls. If necessary, they can be replaced by other advocates as health and time dictates.

ME/CFS patients not only have an undeniable role as study participants, they bring a virtually unparalleled depth of insight into the disease and its many implications. They would prove invaluable as study consultants.
Excellent idea, only I wouldn't confine consultants to patients. I would include someone like Ken Friedman, for example.
 

Scarecrow

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But isn't a patient liaison already in the works, or am I remembering wrong?

I thought someone made a summary of Dr. Nath's webinar toward the beginning of this thread, which might have mentioned it, but I just scrolled through the first several pages and couldn't find it. However, I am feeling particularly brain dead at the moment.
Not sure where the summary is but this is the Q&A section of the webinar transcript:
Dr Nahle: Will this study incorporate patient representatives, patient representation.

Dr Nath
: Oh, yeah, yeah, yeah, yeah. So I'm very eager to do that. The thing is that as I've been talking to people, one of the questions goes, “Who's the patient representative and how many are you going to get? What their role should be?” So, turns out to be much more complicated than I originally imagined. So the extramural folks are much more cognizant of these kinds of things. I think they already have approached people or are approaching people and putting together a panel, and so as they do that we'll be delighted to use that same panel for our study. And so.... But I am all for communication with the patients and patient representatives. And I think that feedback is important and I value that very much. But I... the mechanism... I'm not a hundred percent sure I know exactly how best to do it.
http://forums.phoenixrising.me/inde...e-cfs-initiative-webinar-21-april-2016.44231/
 
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LiveAgain

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The problem with their inclusion for me is that their specialist at NIH is apparently convinced that they have a clearly psychosomatic illness.
Yes exactly. Just to clarify, I don't think FMD is psychosomatic. They have non epileptic? seizures, tics, dystonias etc. I think it's real biologic illness labeled psych and I hope they get some real research too. We asked repeatedly early on why FMD was included as a control and got no response and then the group was dropped with no explanation. If there was a valid scientific reason for their inclusion, there was ample opportunity to explain what it was. They didn't.

I have to say their words do mean a lot (to me anyway). During the teleconference, I think it was Dr. Collins who said something like 'I know you have waited a long time for attention like this' - I really appreciated that. I think a patient liaison with that sort of tone would be helpful.
 

Comet

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Not sure where the summary is but this is the Q&A section of the webinar transcript:
Dr Nahle: Will this study incorporate patient representatives, patient representation.

Dr Nath
: Oh, yeah, yeah, yeah, yeah. So I'm very eager to do that. The thing is that as I've been talking to people, one of the questions goes, “Who's the patient representative and how many are you going to get? What their role should be?” So, turns out to be much more complicated than I originally imagined. So the extramural folks are much more cognizant of these kinds of things. I think they already have approached people or are approaching people and putting together a panel, and so as they do that we'll be delighted to use that same panel for our study. And so.... But I am all for communication with the patients and patient representatives. And I think that feedback is important and I value that very much. But I... the mechanism... I'm not a hundred percent sure I know exactly how best to do it.
transcript-dr-avi-nath-solve-me-cfs-initiative-webinar-21-april-2016
I thought I saw there was to be a patient liaison somewhere. The link you posted isn't working though. But thanks for taking a look! My brainz are kinda ded right now. :meh:
 

Amaya2014

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@duncan I see your point. Probably some confidentiality and other issues but I would think at some points within the study ME/CFS people could participate.

I think it's important because several times within my exams/ tests it was evident the right questions aren't asked and further, doctors tend to misinterpret symptoms. For instance...I get heaviness in my legs (like lead or gravity working against me) when I'm about to crash. All the medical people would say "are you ok? Are you about to fall?" Even after diagnosis no one had familiarity to say "hey, looks like you've over-exerted...it's really important you stop and rest/lie down". PEM, which is as significant to us as someone having a heart attack or an epileptic having a seizure, is unknown to the medical world.

Dr. Jason said "Cause every time you push yourself and have a collapse, like PEM, you're probably doing some damage to the brain...". http://forums.phoenixrising.me/index.php?posts/718960/


There's no familiarity or recognition with ME/CFS... People don't know what to look for or how to respond (except the specialists, patients, close family members and maybe some friends.
 
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Amaya2014

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@akrasia I don't know who Ken is but I do think the liaison/consultant should be familiar and empathetic but not ME/CFS...they need to be fully capable of handling what will probably be a very stressful and demanding position.

They would be corresponding with patient reps and others from PR and the various organizations representing ME/CFS community.
 

Valentijn

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Still only one person has managed to clearly explain to new why a psych control group was a bad idea. So the NIH must be scratching their heads. So I don't understand why people are angry about this.
I think a lot of patients immediately recognized it to be a very bad idea. I simply elucidated why the psychosomatic control group was a very bad idea. And people don't have to be capable of explaining the rationale themselves to be able to agree with an explanation of why it was a bad idea.

But for a brief recap:
  1. Extra control groups reduce the statistical power of a study. Actual abnormal results are then more likely to be calculated to be a normal result.
  2. Control groups are supposed to control for independent variables. Any "control" group which introduces new variables is a really inappropriate addition to a trial. FMD and (presumed) recovered Lyme patients (who were exposed to unknown co-infections) control for very little while introducing a ream of unknowns.
  3. These are not necessarily fatal flaws, if handled intelligently and honestly by the researchers. But with six blatant psychobabblers on the team, there is no guarantee of an unbiased treatment of issues which arise due to these problems.
  4. Some of those psychobabblers (and at least one other researcher) have happily underpowered studies in the past to support their pre-conceived conclusions, and boldly claimed that biological abnormalities are the proof of the presumed psychosomatic disorder, rather that the cause of symptoms of a biomedical disease.

I read here somewhere (too tired to find, because I have no idea which thread) that the reason the FMD group was included was due to something that happens in the brain when tics occur.
This is a lie. Maybe not Nath's lie, but someone lied along the way. The researchers on the team who study Functional Movement Disorder (Hallett, Maurer, and Horovitz) clearly believe that it is a psychosomatic illness, not a biomedical disease.

They have interpreted abnormal FMD brain scans as being supportive of their belief. They have derided these patients by labeling the presumed symptom of transferred voluntary movement upon partial physical restraint as the "whack-a-mole sign". Their belief is that the symptoms are voluntary, and the only problem with the patients is that they wrongly think that they don't have control over their movements.

You can see these summaries and links to the relevant research in the first post at http://forums.phoenixrising.me/inde...the-upcoming-post-infectious-nih-study.43223/
 

Bob

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Still only one person has managed to clearly explain to me why a psych control group was a bad idea. So the NIH must be scratching their heads. So I don't understand why people are angry about this. I understand why people don't want psycho-babblers involved.
think a lot of patients immediately recognized it to be a very bad idea. I simply elucidated why the psychosomatic control group was a very bad idea. And people don't have to be capable of explaining the rationale themselves to be able to agree with an explanation of why it was a bad idea.
Thanks for that, Val. Actually, I got in a muddle - it was the Lyme control group that I was grappling with. I thought the FMD control group was bad from the start.
 

akrasia

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@akrasia I don't know who Ken is but I do think the liaison/consultant should be familiar and empathetic but not ME/CFS...they need to be fully capable of handling what will probably be a very stressful and demanding position.

They would be corresponding with patient reps and others from PR and the various organizations representing ME/CFS community.
Someone like Ken would be perfect for a job like this, although I'm sure there are others; I'm not as plugged into m.e. politics as I once was. Friedman springs to mind because I really appreciated his comment on the current situation at the NIH. (see post 181 on this thread)

Just in general, though, he is someone who has been on the scene for a long time, knows the issues intimately, has defied power in the form of his employers, and will be immune to the seductions of access, which are considerable and undo many.

As a start, here are two links covering some of these themes:

http://www.prohealth.com/library/showarticle.cfm?libid=15000

http://phoenixrising.me/interviews-...e-syndrome-advisory-committee-by-cort-johnson
 

Comet

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I read here somewhere (too tired to find, because I have no idea which thread) that the reason the FMD group was included was due to something that happens in the brain when tics occur.
This is a lie. Maybe not Nath's lie, but someone lied along the way. The researchers on the team who study Functional Movement Disorder (Hallett, Maurer, and Horovitz) clearly believe that it is a psychosomatic illness, not a biomedical disease.

They have interpreted abnormal FMD brain scans as being supportive of their belief. They have derided these patients by labeling the presumed symptom of transferred voluntary movement upon partial physical restraint as the "whack-a-mole sign". Their belief is that the symptoms are voluntary, and the only problem with the patients is that they wrongly think that they don't have control over their movements.

You can see these summaries and links to the relevant research in the first post at http://forums.phoenixrising.me/inde...the-upcoming-post-infectious-nih-study.43223/
The more I think about it, the more I accept that I may have been duped by the explanation of this. :whistle: When I first heard of the FMD group, of course I thought it was a psychosomatic control group and was very much against it.

I have read about the "whack -a-moles" and have read the vetting of the scientists involved in the study (that was a huge amount of work - thank you to all involved! :)).

I also have lived with a fairly severe 'Tourettes-like tic disorder' for the last 6 years or so, which is on top of 16 years of ME/CFS and a positive Lyme diagnosis within the two years (so, yeah, stick me in any control group you want :rofl:). I think I am fairly familiar with being treated as someone with a psychosomatic illness (don't forget to throw in a good amount of misogyny along the way too).

We know that there are psychobabblers involved here. But do we have actual proof that the statement was a lie?

EDIT: Yep, I am completely wrong. My sincere apologies. See my post #234.
 
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BurnA

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We know that there are psychobabblers involved here. But do we have actual proof that the statement was a lie?
The reason given for withdrawing the FMD group at the time was related to a study which found ME/CFS patients to have a normal psychological profile or something similar to that. (Don't quote me but it was along those lines)
 

Comet

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The reason given for withdrawing the FMD group at the time was related to a study which found ME/CFS patients to have a normal psychological profile or something similar to that. (Don't quote me but it was along those lines)
I vaguely remember reading about that study. I didn't realize that was connected with removing the FMD group from the study.

Didn't they just say that they removed the group due to patient's objections? Or am I remembering that wrong (this is entirely possible)?

Not trying to be argumentative, just trying to think through the fog. o_O

@BurnA @Valentijn
EDIT: Found the thread about the ME/CFS patients having normal psychological profiles and added the link. You are right - the FMD control group was removed just as that study came out! It would appear that in addition to qualifying for the Lyme control group, the ME/CFS patient group and the now-defunct FMD control group, I can also be added to the extremely gullible group. :redface: Mea culpa.
 

viggster

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That's a good point @LiveAgain. Given the history..is there anyone at NIH, particularly within this study, or for on- going dialogue serving as an ME/CFS advocate and/or liaison? Is that something that could be brought up in the dialogue? Perhaps, if money was saved with the removal of FMD cohort or a case could be made for additional funding to have 1-2 persons serve as public relations in fielding these questions and as a direct channel of communication? Part of the role would be providing a quarterly or, if necessary, monthly update?

What do you think @Bob, @viggster, @duncan, @Comet, or anyone with some thoughts/knowledge?
The NINDS communications office has spent a lot of time of late answering individual emails from ME folks. Some of these answers include information that is not otherwise public. Answering emails is quicker than posting public web pages because the emails don't require layers of review. One problem: As far as I can tell, the people receiving new info from NINDS aren't sharing it. I wish everyone would, but given that people have been attacked on twitter and elsewhere for colluding and abetting dasterdly deeds for merely suggesting they wanted to interview Wallit, I can understand why people would not want to draw attention to themselves.

Edit: It makes a lot more sense for NIH to hire ME research staff before they hire a communications person. A nurse coordinator is being hired now for the study.

Edit 2: I believe that NINDS is planning regular teleconferences to update folks on the ME program similar to the one they held a few weeks ago.
 
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duncan

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Boy, if we aren't beating up on investigators, we are hoarding information from ourselves, or beating up on our own for whatever reason.

I'm not quite sure what to make of that. PWME are rotten jerks?
 
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BurnA

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Boy, if we aren't beating up on investigators, we are hoarding information from ourselves, or beating up on our own for whatever reason.

I'm not quite sure what to make of that. PWME are rotten jerks?
I didn't get that impression. I think it's nice to get updates from anyone who has an inside communication and whether its @viggster or anyone else the message should go out that it's beneficial for the community.

But unfortunately there is truth to what @viggster said, I have seen people attacked on Twitter and even the fact that the NIH communicated via email was criticized.'covert communication'

Some people will always find a reason to complain. I even saw a tweet recently describing lipkin as the enemy or something along those lines. It beggars belief.
 

duncan

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I would respond, @BurnA , that when a group is on the receiving end of a boot for 30+ years, complaining may result.

It would be nice if a majority of our concerns weren't being ignored or just payed lip service to.

All of us get how important this study is. I suppose that is why some are concerned that we insist on approaching it correctly; some are calling a spade a spade: There is NO good excuse for those three psychobabblers; they should not be associated at all with this study. If a doctor is consistently recommending GET to pwME as a curative therapy, he should not be part of the the group selecting patients since he may not really have a handle on PEM (and by extension, how to differentiate a CF patient from one with CFS.). And please remind me again why a disease every bit as controversial as ME - Lyme - is being offered up as a control? Oh, and where is the ME/CFS patient advocate that is integrated into the study process?

I could go on. Point is, why lay this on the shoulders of the sick? Haven't we been victimized long enough? These issues are in the control of the NIH. They should fix them now that they have been pointed out.

Instead of wagging their finger in our noses accusing us of being naughty, act on our recommendations. We may be sick, but we aren't ignorant about this disease. Use us as a resource. Don't invite us to the dinner table only to admonish us that children should be seen but not heard.
 
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BurnA

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@duncan I was really just replying to your reply to the point @viggster made about communication. Maybe you made it tongue in cheek I can't tell. I realise there is anger but I don't think anger is the right response to everything. As in, by all means criticise the NIH for any failing you see but I don't think anyone was implying pwme are rotten jerks.

We have to be able to make suggestions freely without them being interpreted as an insult to the community.
I think that's all @viggster was doing.
 

duncan

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I hear you, @BurnA. I just feel uncomfortable if somehow @viggster is embarrassed or chagrined by some pwME. I am against nasty personal emails, but my God!, have these investigators supposedly volunteering for "the CFS cause" been living under a rock?? I think if they really understood the disdain and contempt - from the friggen medical community!! - and social marginilazation from friends and co-workers and even family....Maybe they would cut us some slack.